Big fireworks with silhouetted people in the foreground watching

Oh, fireworks again.

It’s been 22 years since my sister died. She had leukemia. For a long time. It relapsed twice and killed her in 1994. She was 10 years old. There were experimental meds before she died, I guess. There was talk of attempting a bone marrow transplant, I think. It never happened. We were tested, but we failed to match. Failed to match. I was only 13 years old, so I didn’t much understand the treatment plans or how risky these decisions were, how close to death she stayed all those years. I eavesdropped and tried to filter through the strain the grownups let off, what was happening, how bad it was. But I didn’t really know.

My memories are fuzzy. Like Kirsten’s head, for most of those years. From age 3 to 10, she was largely bald. She had a nicely shaped head. She had a big, crooked Cookie Monster smile, so the baldness went well with that. 

I have positive memories of being at the chemo clinic and on the pediatric oncology floor of our favorite hospital. The staff and oncologists loved her, loved us. We used to play in the big “recreational room.” Everyone wore face masks, but that was fine. We made crafts.

She was in the hospital for swaths of time. I’ve been told at one point it was six weeks. I think we celebrated all the holidays there, in-patient, at one point or another. Hospital Thanksgiving turkey is not great.

Kirsten really loved fireworks. They were the highlight of her summer. We have so many beautiful pictures of her gazing up in ecstasy at fireworks above her. So many pictures. Thank God.

Every year, my parents worked hard to get her discharged from the hospital for Fourth of July so she could go to the fireworks. If we were lucky, it worked out. Her blood counts had to hit some magical jackpot number to earn her the right to a normal summer kid night out. Some years she was able to have a BombPop with the rest of us, some years she couldn’t swallow and risked choking, so she just had to watch the fireworks without it.

I have a specific memory of coming home from school one day and finding the thermometer on the kitchen counter, uncapped. I was probably in middle school. I saw it and knew Kirsten would be sick again. That we’d be back to the hospital. My mom may have already taken her. I don’t know what adult greeted me when I made my way through the kitchen and into the house. Was my aunt there? My dad? A grandparent? Was my littlest sister home or had she already been passed off to a family friend for the night? I don’t know. I don’t remember. Maybe it was pneumonia that time. Maybe it was a blood infection.

There were times she was in the isolation rooms and we couldn’t see her much. Those were hard. I don’t know. These memories blend. But I remember the thermometer, sitting on the counter next to the phone with the long curly cord.

I remember getting into our family van after the visitation at the funeral home. There were only four of us. The natural body count, buddy system was busted. We were a family of four, not five. That was strange.

I went to summer camp, as scheduled, a week or two after the funeral. I’m sure it was in an effort to get me out of The Sad House. After dumping our bags on our bunks, we did a team building activity, outside, standing in a big circle. “Tell us your name, where you’re from, how many siblings you have.” I was dumfounded. I had no idea how to answer. Fortunately, they’d sent this grieving girl to camp with some of her longest term bestest friends, and one of them held my hand in that circle and answered for me. I don’t remember what she said, but I was so grateful.

It’s been 22 years since my sister died. I now answer people easily that I have one sister, my living sister. Once I really, really get to know someone, I might tell them this tale, the Kirsten story, but it’s ancient, sad history that I don’t have to tell.

My parents don’t have that luxury. When people ask them about their kids, they’re “disloyal” if they don’t talk about their daughter, Kirsten. And then they’re having to relive the tale again and again, being chronic bummers.

We’ve healed. We have to tell people we’ve healed. It’s been 22 years. We can’t be left in that place of sadness. People need us. We need each other to be functional. We’ve left The Sad House, we’ve gone on with our lives. We’ve grown, we’ve married, we’ve been educated, we;ve gotten and changed jobs, we’ve had our own kids, grandkids.

The years roll on and on, away from the point when our lives intersected Kirsten’s. The fresh reminders of her have faded over the years, grief doesn’t stab us as often as it did at first. We can watch her favorite movies, the ones she knew by heart, with mostly joy now. We can tell happy stories about her life without the black sadness creeping up too much. We can get through our weddings and graduations, births of our babies, wishing she was there, but no longer feeling guilty for celebrating without her.

It’s been 22 years since my sister died.

My parents just started braving fireworks again the past few years. They had avoided them all this time, all these decades, not wanting to see them without her. Not wanting to be reminded of that face, knowing they couldn’t see those lights reflected in that smile. Her enthusiasm for fireworks while she was alive made them poison for her grieving parents after she was dead.

Last year, watching fireworks went great for my parents. No crushing depression followed. Maybe they really are healed, they thought. But this year, it hurt. It stunned them how much it hurt. This weekend they felt them like a big, loud reminder of their big, loud loss. It stirred that deep black pool of pain that they try to keep stagnant, and now they’re reeling.

It’s hard to avoid fireworks. My parents have grandkids now, they have Disney World trips and family gatherings and baseball games and… they’re impossible to totally avoid. Is it best to hide, as they did for so long, or to repeat the exposure until the trigger becomes impotent? I don’t know. Who knows these things?

Fireworks keep showing up, year after year, occasion after occasion, as does the grief. Oh, grief again. Oh, fireworks again.

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Say what? Stop comparing? Isn’t that what it means to be human? We compare ourselves to others, our spouses to others and our kids to others, wondering who’s smarter, better looking or more advanced. You may sit there reading this and think you don’t, but it seems like everyone has one little nerve (or a thousand) inside them that compares. But today, today is the day we stop. Or at least make it right.

Jaclyn Nees's son

My son was diagnosed with leukemia when he was only 4 months old. As a first-time mom, his first four months were filled with concern on whether he was meeting his milestones. There was happiness when he did and delight when he was called advanced. But then he was diagnosed, and the world around me crumbled. His milestones came to a halt, and we were just excited when he made it through the day.

Fast forward to now, I have an amazing, smart and beautiful 2-year-old boy whose smile can light up a room and laughter can make you smile through tears, although he is small, unable to walk yet and doesn’t talk much.

People have been asking me for the past two years when he will turn a year old, and it used to pain me when I said he was 2. I used to feel everyone was judging my motherly skills, wondering how a 2-year-old couldn’t walk or talk yet. I used to watch other kids — 8 or 9 months old — just waddling along without any help and already saying five or six words. I used to talk to his doctors in tears wondering when it was going to be his turn. But with all things, all he needs is time.

That’s all anyone really needs, isn’t it? Time to grow. Time to heal. Time to prosper. Instead of wondering when he’s going to do these things and getting offended when people ask me if he’s 11 months, I proudly say he’s 2. We’re so lucky he’s here to be 2. So lucky he’s not cooped up in a hospital room, watching the days pass through a window. So lucky he’s here to continue his treatment (though it can aid in his delays) and to end it soon so he can finally grow, heal and prosper.

Everyone has a unique story so comparing is irrelevant. Comparing him to other kids is like apples to onions. Even kids going through the same thing aren’t comparable because they all experience different side effects. I would never compare myself to another mother, whether she’s cancer mom or not because everything we go through is different.

So, stop comparing. Cut yourself some slack. Cut your loved ones some slack. And love yourself and them with everything you got. Tomorrow is a blessing when you get to wake up in it.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Last night, I put my 2-year-old son to sleep as I often do. I turned out the light, turned on the sound machine and arranged all of his many blankets and pillows around him the way that he likes. My son lowered his head and snuggled in. Then suddenly, he shot up in bed and grabbed his forehead. He started to cry. I had no idea why. I didn’t hear him hit his head. I didn’t see anything happen.

Casey Crosthwait Crimmins's children.
Casey’s sons.

And that’s when the thought crossed my mind. What if it’s a tumor? What if my youngest son has cancer, too? How many stories have I heard from other cancer parents that start just like this? “My child was fine, and then he wasn’t.” “My child suddenly experienced a sharp pain in her leg/arm/head/chest, and that was the cancer.”

Now I’ll pause here to say that I know some parents may have these catastrophic thoughts about their children from time to time. The nightmare scenarios. The worst-case possibilities. I know I certainly had these thoughts even before my eldest son was diagnosed with leukemia a few days after his fourth birthday.

I think the difference is I now know cancer isn’t just a nightmare scenario that happens to other families — but not to ours. It has already happened to us. And it could happen again. I know families who have experienced this very thing. It’s out there. Floating in the atmosphere of possibilities. And it haunts me. It claws at me. Like a sticky, translucent spider web I can’t see, but I also can’t quite seem to shake.

Let me reassure you that my 2-year-old immediately calmed down last night, and it was clearly just a bump from the headboard of his toddler bed. But the fear lingered for me a bit. I stayed extra long in his room even after I heard his breathing slow, just watching him sleep.

Things are so good right now for our family. So very good. Our eldest son, now 5 and half years old, is healthy and happy. He’s thriving. His biggest excitement at the moment is the fact that he has his first “wiggly tooth.” He is all aflutter about this. It is, quite simply, adorable. He loves his friends. Loves his Legos. He is obsessed with all things “Star Wars.” He’s a normal little boy who insists on wearing athletic shorts at all times now, even if this means wearing them over his sweatpants on cold days.

Things are so good right now. So very good. And I’m terrified it will not last. I’m terrified there will be a day when we hear that terrible word that I can’t even say out loud without dropping my voice to a whisper. Relapse. It is the ugliest, most hated word in my lexicon right now. Matched only, of course, by cancer.

Right now, my anxiety is calmed by the little chemo pills we crush up every night and administer to our child while he sleeps. It’s a buffer to the cancer. I feel like it protects us from harm, as much as I hate feeding chemicals to our child every single night.

October 2017 will be a joyous time in many ways in our house because it will be the end of my son’s cancer treatment. We will celebrate. We will ring that bell in the clinic with gusto and cry happy tears. It will be wonderful.

It will also be one of the most terrifying days of my life. Our buffer will be gone. There will be nothing to stop the cancer from coming again if that is its will. And relapse for my son means a change in prognosis. It means falling down the rabbit hole of bone marrow transplants, hospitalizations and much more chemo. The very thought of it makes me weak in the knees.

There are times when I worry that I couldn’t survive it. Couldn’t endure it. Oh, I know I would. There would be no choice. But it seems so much harder to go through it all over again. As a dear cancer mom friend told me recently, it can be worse sometimes when you know what to expect.

But this is us right now. We are doing great. We are enjoying life and feeling like the luckiest human beings on the planet.

Casey Crosthwait Crimmins's children.
Casey’s sons.

I didn’t write this post as a pity party. I hope it didn’t seem like that. I think I just needed people to know there’s another side to every picture. We are good, we are happy — yes. But we are also scared out of our minds that our good fortune will run out. That we sometimes feel like we’re operating on borrowed time. I hope this feeling goes away. It would be nice to relax into my beautiful life.

But in the meantime, I have to say that I do feel grateful for these amazing sons of mine every minute of every day. We don’t take anything for granted. That, it seems, has been cancer’s only redeeming gift to us.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


My child’s three-year battle with infantile leukemia created a unique circumstance, introducing countless medical professionals into our lives. Some were mastermind doctors, but most were an assortment of wise nurses, therapists and other professionals who really make the worlds go round inside a pediatric hospital.

On certain dark days, the only light a cancer mom like me would see came from the caring medical employee with extra supplies of compassion. Usually I had plenty of time to profess my appreciation to my superhero in scrubs, but other times my son Matthew’s critical condition left no time for the exchange of proper thank you’s.

Matthew’s first nurse was one I never thanked for rocking my ever-loving caregiver world. She worked in the PICU and was there as I received my child’s cancer diagnosis. Nurses who work in PICUs are very familiar with babies in critical condition, and I was thankful for this expert nurse who came with the perfect touch to soothe my cancer-stricken 2-month-old. I watched my teacher, intently absorbing all I could, because a baby with cancer was shockingly new to me. This guardian angel taught me many things, like how to snuggle a baby attached to a militia of medical equipment, but she also bestowed upon me a very crucial skill every cancer parent should have. My wise PICU nurse told me I had a voice in this big cancer mess and I should get used to using it. She went on to explain that though I would encounter many specialists along our journey, there was only one Matthew expert. That expert job was given to me, his mother, and I was my baby’s voice.

I became desperately attached to this PICU saint and secretly cried every time her shift came to an end. I wanted her to hold my hand in this new, scary world where kids get cancer, but that was not plausible and soon I would have to utilize that voice my good mentor said belonged to me. Matthew was now no longer in a drug-induced coma, and seemed to be thirsty but unable to drink. A different PICU nurse and I had been trying for hours to quench my little boy’s thirst, but when we put the bottle to his mouth he was too weak to latch on. The louder my baby screamed the more anxious I felt and I asked for her to get the PICU doctor. I know a thirsty baby hardly presents the biggest emergency in a PICU but the only kid I heard screaming was mine and someone needed to help him.

The PICU doctor walked over with authority and my new nurse began to quietly explain our situation. This particular doctor’s authoritative presence seemed to make the nurse uneasy. “Well, feed him a bottle,” the doctor replied very matter-of-factly. “We have been trying, maybe we can get orders for tube feedings,” she said in a quieter voice.

The doctor ignored her. “Keep trying,” he replied.

I felt my face get hot as the doctor turned on his heel to leave. Suddenly a loud, authoritative voice spoke out. “You try,” I stated most matter-of-factly. The nurse’s eyes widened and the doctor turned around, his eyes meeting mine as he asked for a bottle.

It would be a good old Western stand-off as the nurse hurried off to prepare the bottle. The doctor took great effort to get Matthew to drink, my boy howled and screamed in frustration, and with frantic efforts Matthew grasped for more than just a few drops.

This time when the PICU doctor turned to leave, he was diagnosing Matthew with weak mouth muscles and was on the phone with physical therapy, who was on their way to teach Matthew how to bottle feed again.

That was just the first time I used that voice but not the last. I would use that voice again when I needed doctors to see Matthew as not just a diagnosis but a child. I used my caregiver voice yet again asking for second opinions when doctors told me there was no more hope for Matthew.

I wish I got the chance to tell that PICU nurse how important she was to the long haul of my child’s fight, and I hope she is still using her Yoda nurse skills empowering scared parents in those early morning hours.

Another kind lady who was subjected to my lack of proper etiquette cleaned Matthew’s hospital room. She did this while singing R&B tunes and though she was no Mariah Carey, her room cleanings always had extra doses of entertainment. She would twirl about mopping the floor while serenading Matthew with “Always Be My Baby.” He would squeal with delight each time she graced our presence.

To Matthew, she was better than Mariah Carey.

One day after her normal routine of vocal bed-making, she placed on his medical crib an elaborately wrapped gift. Matthew was thrilled to get a gift from his favorite rock-star and she went on to say how she only buys the most special kid’s presents. “I have an eye that seeks out the extraordinary,” she whispered with a wink.

As our time at the hospital turned from days to months I noticed a trend with her “special children:” They were all newly diagnosed. I would overhear other parents expressing thanks for their child’s gift and I would often hear her reply, “I have an eye that seeks out the extraordinary.”

It makes me smile just thinking about that cleaning lady with a brilliant set of eyes used to remind newly diagnosed cancer families that life still contains extraordinary gifts.

two nurses wearing scrubs standing over a crib
Two nurse assistants who visited Matthew in the hospital.

I could never forget the two nurse assistants in the picture who stole my ability to communicate one day. These two ladies had spent a lot of time caring for Matthew. They helped me bathe a tiny boy attached sometimes not just to one IV pole but two. They would search for that perfect toy or movie to help appease my toddler. Meticulously they cared for Matthew like he belonged to them. One day word had gotten back to these ladies that their little hero was in critical condition, and the unfortunate word on the street was Matthew wasn’t going to make it.

Unpleasant “talk” about dying children you love is enough to stop most people from wanting to visit after a long work shift, but not these two. They walked into a dark room and made it really bright with a great big hug. We laughed, cried and spoke fondly of their little “boyfriend.” When the visit had come to an end and they faced my dying boy, I expected them to say their goodbyes. But I was shocked when I heard powerful words of hopeful prayer. These strong women of faith were a blessing on that dark day in the PICU. Right before they walked in I had been in a very desperate state, and in that moment our relationship was stripped of restricting titles like patient, caregiver and nurse assistant. We had moved into that deeper realm of humanity where love prevails in the faces of life’s tragedies.

I was left speechless that day. The “thank you” I meant to say was replaced by uncontrollable tears.

One other man who will forever be treasured in my broken heart looked like Santa Claus, but instead was a respiratory therapist. He probably never took a lesson on comforting newly grieving mothers, but that would not prevent him from holding me upright as I watched my precious child leave this world. Our family was always fighting hard for Matthew and when his cancer battle displaced us miles from our home, my husband and I knew an emergency situation might mean I would be alone. When Matthew’s medical situation took a turn for the worse, his father made flight arrangements for himself and Matthew’s siblings to arrive early the next morning.

Cancer had other plans and would not wait for early next morning. I remember feeling weak in the knees as I stood alone watching my boy’s life slowly fade. I took a step back to steady myself against the wall when I felt a strong arm pull me near. It was Matthew’s large jolly respiratory therapist who last I noticed was doing respiratory stuff with his team.

Someone must have said, “She’s going down” because next thing I know he is holding me tight not saying a word. His strong embrace was comforting and I leaned into his big, loving presence. He never left my side until Matthew’s primary care doctor arrived who quickly took over the duty of hugging the crying mom.

If cancer would have had its way that day, I would have stood alone as cancer took my boy and I never did, thanks to that Santa Claus in respiratory therapist’s clothing, who stood in for the father and husband who was on his way.

I bet many medical professionals who have said they work with children with cancer have heard, “I could never do that job, it’s too sad.” Pediatric oncology is filled with a grand mixture of sad and beautiful moments, and it certainly does takes a special breed to work with the child patients of the world.

To all those loving souls who choose this medical career path less traveled by, thank you, because as Robert Frost would say, you have “made all the difference.”

baby boy sitting in high chair laughing
Aimee’s son Matthew.

Follow this journey on Matthew Robert Pierce’s Facebook page.

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


When a teen was bullied for having cancer, her classmates and the community didn’t hesitate to offer support.

Nicole Pfister, 14, of Laredo, Texas, has a high risk form of leukemia, according to her Facebook support page.

 

Two of Nicole’s classmates, her ex-boyfriend and his new girlfriend, recently uploaded photos of Nicole to Instagram mocking her for her cancer and even encouraging suicide, KGNS reported.

One had the caption, “Knock, knock, who’s there? Not your white blood cells, that’s for sure,’” according to a post on the Team Nicole Facebook page. Another said “embarrassing” and “kill yourself” under the same picture.

Nicole’s mother posted the hurtful photos on Facebook to draw attention to the issue of cyber bullying, and soon nearly 10,000 people have shared the post, many of them offering an outpouring of support and encouragement.

Albert Aleman, principal of United High School, told ABC News that administrative actions were already being taken to deal appropriately with the students who mocked Nicole. But her peers wasted no time in coming to her defense.

Students put a call out on social media for everyone to support Nicole by wearing orange, the school’s colors. Nicole’s mother wrote on her Facebook page that the family was touched by the way the whole community turned out to support the teen.

“This morning as Nicole is getting ready to go to school she is beyond nervous,” read a post on the Facebook page. “What we thought of a simple post has had over 10,000 shares and our whole community supporting Nicole… Thank you to all who are wearing orange today in support for Nicole. We will not stand for cyber bullying.”

As of Thursday, Dec. 10, the teens accused of writing the posts were arrested and are detained at the county jail on charges of public harassment, KGNS reported. An investigation is ongoing.

Get more on the story from the video below:

 


Vivian, 2, was diagnosed with acute lymphoblastic leukemia this past winter, and because of her compromised immune system, she has had to spend a lot of time in isolation at the hospital, USA Today reported.

Ironworkers Travis Barnes and Greg Combs happened to be working on a construction project visible from Vivian’s ninth floor window at the St. Louis Children’s Hospital. Each morning they would wave and smile at the child.

Screen Shot 2015-09-04 at 9.21.02 AM

Vivian looked forward to it each day, her mother, Ginger Keith, says in the video below.

Then, one day, Vivian and her mother looked out the window to find not just their favorite waving construction workers, but a note. Barnes and Combs had written “Get well soon” on a beam for Vivian.

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I was thinking about my own kids and how precious life is,” Combs told USA Today. “It makes me happy that something so simple like that could make somebody’s day better.”

Now that Vivian is out of isolation, she finally got to meet her construction worker friends in person.

See their interaction and get more on the story from the video below: 

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